Hope4Peyton

Peyton = no change.

That's good stuff!

I, however, reinforced the universal catch-22 that no matter how hard you work to clean out a room it always seems to get a LOT worse before it gets any better. I took trash bag after trash bag of yard sale stuff AND trash out of the girl's room…and each time I came back it was as if stuff-fairies had dashed in during my absence to throw more things around. In fact, I have the suspicion that some things were crawling out of bags and creeping back into the room when I wasn't looking. I would tell you that the room is pretty much put back together, neatly and organized…but I'm afraid that when I walk back in there it'll be all back like it was this morning when I started…like some freaky Martha Steward twilight zone episode.

Tonight at the Children's Cancer Center family support group we talked about siblings. The fact is that cancer can hit a family hard, but sometimes you don't feel the effects until things have calmed down a bit. I so appreciate the time that we get to talk to the other families, to bounce what's going on in our lives off of them and see what's happening for everyone else. I know for us, Nathaniel and Rachael have done tremendously during the most stressful times of Peyton's treatment, they've been diligent at school…they've learned to be more helpful at home…they've adjusted to the multitudes of changes that have had to happen in our home life due to Peyton's sickness….and we've felt like they've done the best they possibly could under the circumstances. They're 6 and 9!

But they've also suffered through having Mom and Peyton up and leave for days at a time with no warning…they've had to tiptoe through the house because "Peyton's sleeping" or "Peyton doesn't feel good" or "we just need to leave Peyton alone right now"….they've watched her get the bulk of the attention from people asking how she's doing, from us coping with side effects of one medication or another, even from this website. They've missed out on parties because I couldn't take them when Peyton's counts were low…they've dealt with me being gone for class events and field trips because they coincide with clinic trips…they've missed out on things just because at the end of the day I was too pooped to take them.

I see the effects in Rachael….she's always been a clown, but these days she's just crazy for attention, any attention…especially if she sees someone who's spending time with Peyton…she wants to jump in and be the center of the attention. We have to have these talks about WHY Peyton gets to do certain things…why we give her certain allowances like sleeping in our bed or staying up later or watching tv in bed…why she comes home with new presents all the times from the clinic or in the mail. It has helped in some ways that I've taken the kids with me to the clinic and Rachael's seen some of the less invasive procedures…the finger pokes, the port access, the leg sticks…and she got to come down and see the radiation process as well…and that's made the reality of what Peyton goes through MORE real for her. But one thing they talked about at the support group tonight is that siblings begin to wish that they were the sick child so that they could have the attention and get all the prizes, deciding that maybe it's worth it.

For Nathaniel, it's the opposite….he's willing to be totally self-sufficient…he's always been quieter, more easily occupied…all he needs is a video game and he'll disappear for hours. That's been so easy for the past months…when I'm tired and worn out and he's bored….why not just let him go play and he's fine. But it's become his complete obsession and he'd rather be playing a video game than anything else. It got to the point that he tried to trick Pete and I by hiding his Gameboy in his camp gear when he knew that A) he was grounded from video games and B) he wasn't allowed to take it to camp…it got ugly. He's now video game free until roughly 2008….I'm hoping that I'll be able to teach him the wonders of reading and arts and crafts.

During the sibling talk at group, several issues were brought up that often need to be dealt with:

–a sibling gets angry at the sick child for taking so much of the parents' time and attention
–a sibling wants to get sick or pretends to be sick to try to bring some the focus on themself
–a sibling is fearful of getting sick or other family members getting sick, like mom or dad
–a sibling will get attention, good or bad, any attention is good attention
–siblings start to struggle at school, have issues at home, conflict with friends

The Children's Cancer Center is leaning towards starting a thing called SibShops, which is a group to focus singularly on the needs of the siblings….teaching them ways to communicate how they're feeling about what's happening with their lives and how to voice their frustrations or fear. I'm so hoping that it comes to be, that this will be another support tool for our kids…another way to reach Nathaniel and Rachael and help them cope with all the changes they've had to deal with. I know that our kids are not the only ones going through these personality and attitude issues and it could be such a positive thing for them all.

It just feels like we've worked so hard to get through all this chemo and treatment and now we have to deal with the side effects on the rest of the family. We'll have the time to spend with them, be able to plan for some fun stuff and concentrate on being a family again…..I'm praying.

This is one of those many, many moments when I'm so glad that I can just give it up to God and ask Him to lead us in the right direction…I trust Him to grow us through this and build us all into stronger people.

So, tomorrow is homecoming for Nathaniel and Rachael. I hope that they have had a wonderful time during camp, enjoyed their time with their friends and the fun of experiences like canoeing and sleeping in the cabins. I can't wait to see them, hug them and hear all their fun stories! I have missed them so much and our house is so terribly empty without their noise and voices…even Peyton has started missing them, tonight at the CCC she talked about them all night to Miss Sarah and made them a special "welcome home" picture….this is a big gesture!!

Thessalonians 5:16-18 Be joyful always; pray continually; give thanks in all circumstances, for this God's will for you in Christ Jesus.

I want to share that I am JOYFUL that my very disruptive neighbors have now been quiet for two nights in a row….yeah!!!!

f.r.o.G…fully relying on God
–Anissa

Just to keep things interesting on our street we had a house of teenagers move in. Teenagers right out of high school, first house with no parents. We finally manage to get most of our kids off to camp and now we have to deal with the delinquents down the street!

We now have the kind of neighbors that will now have us watching COPS to say "Hey! Hey! there's our house when the neighbors got busted! Look, kids, there's your dad filling out a police report…aren't you proud?" We have the neighbors that caused us to get out of bed at 1 in the morning to see what all the screaming is about….and then the cops DID come…along with fire and rescue and ambulances….and between our house and theirs lives a county SHERIFF. These people are not very bright. We don't live in a ritzy upscale neighborhood, but we do live in a nice little suburban area with nice families and lots of kids…and now we have thugs.

I came to the realization that I have really gotten too old…I have become part of "the man" trying to oppress their youthful fun because I want them to turn down their music, take the party inside and go away! I can no longer hang. I am no longer cool. I am no longer down. I am an old fuddy duddy who wants it quiet at night!

It is still quiet on the camp front, no news, no calls, no pleas to come home…so I guess they're still having gabs of fun and living it up. Pete is using his last day of vacation to rewire the house for networking purposes…that's always an adventure. Other than that we've been accomplishing great big balls of nothing! Pete's learned to do some new card tricks, I'm going to hit the kids room armed with trash bags and a firm resolution that they truly are not underprivileged and won't miss half the things I'm about to get rid of. It'll be interesting to see if they recognize any of the stuff that shows up in the yard sale!!

News and updates:

*We continue to ask for prayers for [url=http://www.caringbridge.org/visit/nikkihawkins]Nikki Hawkins[/url], her fevers are starting to become more sporadic and they are hoping to transfer her from Arnold Palmer to All Children's Hospital as soon as they feel she's stable enough. They have her on heavy duty morphine from the pain caused by her GCFS treatments, so she's finally feeling better and not quite so "foul"–that's the term her mother uses, not mine!

*[url=http://www.caringbridge.org/fl/sydneysims/index.htm]Sydney Sims[/url] is still in NY, her test came back for neuroblastoma, so it's more chemo and radiation treatments. According to the last update on their website, Michelle says it's intense, but she has responded favorably to this cocktail mix of chemo/radiation. Our prayers are with them as they get underway with treatment and for Sydney's continued strength and spirit, for her family's perseverance and faith in God's plans for them all.

*[url=http://www.caringbridge.org/visit/samanthalee]Samantha Lee[/url] was so disappointed when her planned "Dream Wish" trip to L.A. to meet "Hannah Montana" and see a taping of the TV show was cancelled due to scheduling issues just days before their departure date. The Children's Cancer Center jumped in to raise this sweet little girl's spirits by sending her family to Discovery Cove this weekend for a swim with the dolphins. We are praying for a wonderful time and fantastic birthday celebration for Sam and her whole family!

*[url=http://www.caringbridge.org/visit/allieblain]Allie Blain[/url] is our bestest little friend from clinic who has ITP (which is a platelet disorder that is too long for me to even try to remember how to spell). She's been undergoing chemo to try to fight the ITP, but it's been unsuccessful so far. The docs have taken her off the current treatment and are coming up with a new plan of attack. Please keep this sweet girl and her wonderfully faithful family in prayers as they seek a treatment for Allie that will allow her body to repair as it should.

And of course, Peyton, who is doing so well following radiation and chemo. She's been smiling and feeling well…she naps long during the day, but nothing terribly out of the ordinary yet. She's been eating at least one decent meal a day and although she looks a little pale her energy level is fair. I continue to be awed by her ability to be happy and cheerful in the face of all we put her through.

f.r.o.G…fully relying on God
—Anissa

The kids were at camp….Peyton was asleep in bed….I should tell you that as a good, concerned, slightly obsessive parent I was up all night worrying about whether or not they brushed their teeth before bed or if they they warm enough in the blankets I dug out of the trunk of the car (that I was thankful to find because I had forgotten to grab their blankets in the rush out of the house and they were therefore going to be THOSE kids, the ones whose parents didn't care enough to pack them basic necessities). Not so much.

Frankly, I was amazed that I didn't wake up in a heap on the floor next to the door because I'm pretty sure I lost all consciousness as soon as I switched off the light. Apparently I held on long enough to crawl to the bed and pass out there. I had the most fantastic night of sleep….it was completely solid, uninterrupted, quasi-coma type of sleep….bliss. The kids could have been calling all night with pleas to free them from the barren horrors of camp…and I would have slept through every moment….because that's the kind of mom I am….they just don't make Hallmark cards like that.

I'm thinking about my kids out there roughing it in the wilds of the jungle….in their little air conditioned cabins with running water and brand new sheets, with showers and toilets and bug spray…wow, how could I have sent them to this horrible place?? Why would I spend time worrying…it's possible that it's nicer than what they have at home! They have a pool!

Peyton and I took off this morning and went to the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url] for Lil Tales playgroup. She must have asked me at least 11 times if Cody was going to be there, if Dana was going to be there, if Miss Kay was going to be there….I could take this kid to the North Pole and as long as the Bertoch family was standing there to greet her with a bag of chips and hugs, she'd be happy. I got to spend a few hours laughing with friends and sharing stories that I'm sure our husbands are glad they don't have to sit through. There was both funny conversation and talk of the future, plans about what we're going to do "after"…for some reason, maybe we're scared we'll jinx ourselves, we don't spend a lot of time talking about what we hope things will be like after we're done with all the hospital stays, the clinic trips, the medicines and pokes. When Peyton was diagnosed it was if we literally put everything we had planned for our future on hold…home repairs, a new job I was planning to take, activities for the kids, everything just went into a deep freeze while we figured out how to best cope with this huge obstacle. As the first year is almost under our belt, and we prepare for maintenance I know that I am starting to think about how life goes back to normal. If it ever does. What is normal for us now?

Mary Ann, the executive director at the Children's Cancer Center, made a point that after the dust settles and the treatment is over, all the things that have been set aside in the wake of the cancer have to be dealt with and all of a sudden there is less support for the families who are used to being actively involved. We talked about the aftermath, the moments after we stop treatment and we realize "wow, our kid really had cancer", when you're not so fully IN the moment that you can stop and take a look back at what you've all been through and take it all in. I wonder what this blog will read like to me years down the road…when I've forgotten what it's like to look at Peyton's little bald head at night with a fist of fear in my heart of what life would be like without her.

I plan to never forget. I don't want to forget this feeling because this is what will drive me to keep active and involved and want to find that cure, want to make life easier and better for families like ours. I don't think I can plan to go back to a normal life because what was normal before was to live without the knowledge of what cancer could do a family when it takes over the body of your child. For some, the personal cancer battle ends much too soon, a life lost….and for some, the battle ends when the cancer is gone. I think for us, the fight will go on forever…a battle against cancer for all kids…not just Peyton, not just the kids we know….each child that is affected and each family who doesn't yet know what they're up against.

I don't know if I thought I would ever thought I would get to this point when I wanted to start thinking about the future. Making plans again. Good grief, it was hard enough for me to try to sit down and plan for our Dream Wish trip for the last of July…I don't make plans that far in advance!…I only write things in pencil…everything I do comes with the disclaimer "all plans are subject to change…".

Some parents have careers to go back to after they give up the roll of caregiver…some never left…I had a job I had to leave, but now I have to think about what I want to do AFTER. What do I want to be now that I've grown up? Do I want fries with that? I'm just praying that the answer will come, that the right door will open and I will be shown where I'm supposed to be in all of this.

Ok…this is what happens to my brain when I don't have kids to keep me occupied!

Peyton-Palooza is still barreling towards the big day. Yard sale stuff is starting to seriously pile up. The truck is full of stuff that Angela brought me during our stay in St. Pete….and I mean FULL…the car is full of computer equipment Kara brought me this morning to the Children's Cancer Center…a bunch of teenagers just dropped of a truck full of stuff to our garage. It's sort of fun, because I love to go garage sale-ing and its like the yard sales are coming to me! We have stuff coming for the auction portion, I have a box of temporary tattoos, we have Storm Troopers on standby, we have promises of baked goodies and yummies, plans are coming together and it's going to be a wonderful day.

f.r.o.G…fully relying on God
–Anissa

[url=http://www.caringbridge.org/visit/nikkihawkins]Nikki Hawkins[/url] is still at Arnold Palmer Hospital in Orlando and she is not doing any better, in fact, her fevers are getting worse. I know her family is very scared for her and Nikki is feeling awful.

I'm asking that we all go to the Lord in prayer today to ask to Him to keep her in His comforting arms and to give her the strength and comfort she needs. Her body is so frail and weak, she will only start feeling better with His power and might behind her and we pray that it will be soon.

Arnold Palmer has a wonderful system where you can email a patient and they will print them off for the child and take it to them for support and encouragement. If any of you are willing to just take a moment and send Nikki a few uplifting words, I know she and her mom Penny would appreciate it and it will help carry them through the day.

[url=http://www.orlandoregionalhealth.org/forms/patient/]http://www.orlandoregionalhealth.org/forms/patient/[/url] Her room is 7002.

Thank you so very much!

f.r.o.G…fully relying on God
–Anissa

We got a great surprise this morning when Peyton's counts came back moving in a positive direction. After steadily dropping over the last few weeks, her ANC was finally back up to 500, her hemoglobin was up to 11 and her platelet count was over 50K….that's awesome considering where she was at the end of last week. This left her well in the range to get her chemo today so she got her dose of Vincristine and her double leg shot of Vincristine…always fun…and she also got an echocardiogram to check for any side effects from the Doxirubicin that she finished a few weeks ago. I'm not sure when we'll get the results from that test. A check of Peyton's ears found an infection brewing and that may be the cause of the hacking cough she's been suffering through for the past two weeks, so she's now got an antibiotic to take to get that taken care of.

It was so good to be back in our own clinic…to see the familiar faces of our nurses and staff. It's hard to believe that we would miss them, but we did! I know that as we move into maintenance and our clinic visits become more spread out we will see them less and less but they will still be dear to our hearts for all the wonderful care and love they have given us.

Another surprise came to us today. As the camera person in our family, I am usually the one behind the lens and rarely the one in the pictures. You'll notice that very rarely am I actually IN any of the pictures that I post….there's a reason for that. A couple of months ago, Peyton and I were treated to a photo session from a group called Flashes of Hope, they came to the clinic and set up shop with makeup and hair artists from the Aveda salon and the final product of that photo shoot was given to me today.

I will treasure these pictures forever.

Tonight the family piled into the car and drove to drop Nathaniel and Rachael off at camp. With instructions to remember to brush their teeth EVERY day, to put on sunscreen and to have lots of fun, we kissed them goodbye and left them for the rest of the week. The house seems abnormally quiet and I miss them already, but within minutes they were having fun and anticipating all the fun stuff planned for them throughout the week. I know Nathaniel will have no problems with being gone, this is his third year of camp….but my heart is a little heavy with Rachael being gone, this is her first time away from us like this. I'm praying that as she lays in her bunk tonight she remembers the extra kisses I pressed into her hand to hold as a comfort and that Nathaniel is just a few doors down.

Please say some extra prayers for our friend [url=http://www.caringbridge.org/visit/nikkihawkins]Nikki Hawkins[/url]. Nikki left for the American Cancer Society Camp this week and only got to spend two days having fun when she got a fever that send her to Arnold Palmer Hospital in Orlando on Friday. She's been there fighting low blood pressure, a high heart rate and the fever ever since and she needs our prayers for her body to recover and for her to start feeling better.

f.r.o.G…fully relying on God
—Anissa